Mayo Clinic Connect
My son has been suffering with this for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.
Liked by mapchap, pijax, lioness, nacc ... see all
I didn’t read all ur posts but I caught this one. Some of ur symptoms sound similar to mine. Maybe ask doctor if you could have Strep B, he will prolly look at u crooked though. It’s different from Strep that causes sore throat. Most of info you will find has to do with pregnant woman, because it can be transmitted to child during birth and can be fatal. It’s only been in recent years that it has morphed into a bit of a “Superbug,” affecting more people with weak immune systems. I broke out in rash and sores all over my body. My primary Dr actually took a scraping of sore to diagnose it. Good luck!
Have they done tests for Specific Antibody Deficiency? this is my case and I suffer the same. it took YEARS to be diagnosed.
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Can you tell me what type of doctor you saw to have this testing done? My daughter is suffering and I would love to find someone who may help her.
I don't understand Dr.s now a days . Just my family Dr. sent me in for the EBV blood work and it showed the high titer count But I had the rash also that's how high my count was . She said usually you don't have the rash with it but any Dr. should be able to order the blood work. I would request this specifically from Your Dr if you have the symptoms , CFS,sore throat, listlessness ,the big one is fatique. I had to go on the sick list from work till I got better . Bedrest ,fluids ,a lot of vitamins as I remember . Have you tried Infectious disease Dr. Endocrinologist , Rheumatologist but your PCP should also know about EBV Good luck everyone
I contracted EBV in 2015 from someone in the gym I was going to. I went from being in the gym every day to barely being able to move. This all happened one month before I turned 40 so I caught it late and it took months of doctor visits to get that much. As things progressed I was diagnosed with CFS. Fifteen months ago I ended up in the ICU and since then I literally feel like I've been poisoned, that's how bad I feel on the inside. I feel like my mind is gone, my pain is debilitating, dry eyes, stomach and digestive problems, neuropathy in my feet, mouth issues, can't deal with temperature changes, cold hands and feet but sweating,oversensitive nerves, sinus infections that antibiotics couldn't touch so I had to have sinus surgery and the list goes on. Now after numerous ER visits and about 15-20 specialists I've been told it may be Chronic EBV but now my bloodwork is showing an autoimmune disorder and this was only after I told them to test me for it. It looks like a reactivation that does not go away. The problem with this illness is Doctors DO NOT know about it. I'm scheduled for an endoscopy in two weeks then onto the infectious disease doctor. I'm to the point that I am so miserable that I enjoy nothing. I've tried to read as many of the posts as possible and it seems like we all have the same issues of varying degrees. Has anyone had luck with Anti-Viral meds or anything else?
Hi antivirals did help me and gave some relief from the reactivation of mono. It turned out to be Epstein Barr after many times requesting a blood test. My regular doctor an internist recommended them. I went to a very expensive infectious disease doctor and there is no cure only some treatment with antivirals. There r surgical treatments in Germany and Belgium where A famous female singer went and is now touring. The infectious disease doctor said just treat the symptoms as they come. A doctor from the national institute of health is working on some injections for prevention and different stages of Epstein Barr.
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I'm glad you have put this out there. When I came down with EBV eight months after spinal surgery. The EBV attacked my joints. I couldn't care for myself….basic needs. My Internist never heard of using antivirals, like Acyclovir to treat it. I learned about here, on this forum. I mean, EBV is in the herpes family, it only makes sense. We have to educate ourselves….especially when you have a doctor that doesn't care to investigate to help.
Liked by Marianne, aeg73, mblack
I had mono when I was 20. I'm now 52 and got very sick in July and my EA test showed reactivated EBV. I now think I have CFS. I'm extremely fatigued and weak/achy in the legs. Been through 4 specialists who can't find anything. All of them deny that reactivation can cause symptoms. Am I going crazy?
No, you are not crazy! I've only had luck with an immunologist, naturopath, and acupuncture. High protein, high fat, low carb help. So does taking electrolytes. I use a Nuun tablet in my water every morning. Ultima is another good brand. Best wishes to you!
Hi @cstrandberg Welcome. No, you are NOT going crazy! My story is similar to yours. I also had mono at age 20. My latest major relapse of EBV was at age 43 (although not recognized by doctors — even with a positive IgM). I am now 47 and am just starting to get back to life after a wild roller coaster ride of ups and downs. I now know that CFS was most likely the cause of my EBV relapses. Unfortunately CFS is not taught in most med schools and most of the conventional medical community does not understand what this disease is and what it does to the body. Even the Mayo Clinic website is not up to date. However the CDC is. You can search for info about CFS at their website cdc.gov. There is even a section you can print off for healthcare providers that explains the pathophysiology of the disease and that it is a REAL disease. Keep in mind, doctors thought that those with MS were crazy before the advent of the MRI. They actually called it hysteria until the MRI came along and showed that there was deterioation of the protective sheath around the nerves……. There is a lot of current research in CFS now and it is promising. Hopefully conventional doctors can get up to date on what this disease does to the body and how devastating it can be. I will leave a few links you can check out of you'd like. https://solvecfs.org/what-is-mecfs/ https://emerge.org.au/ If you'd like to hear more about EBV and some of my journey you can check out these posts on my blog https://backtolifewellness.blogspot.com/2019/03/the-sleeping-giant-in-us-all-epstein.html
It is possible to recover! I have made tremendous strides this year since working with Dr. Rodger Murphree and doing the DNRS program (www.retrainingthebrain.com). Less than a year ago I could not walk from my bedroom to the kitchen without having to sit down. Last month I enjoyed hiking for a few days in Kentucky! 🙂
I hate that you are going through this and wish you well soon!!!
Hi @mblack I am so sorry to hear of your illness with EBV. I would recommend you see an Intregrative Medical practice. They seem to know more and are more willing to help you treat this illness. I have been battling this virus for over 30 years. I was a young mother with two sons, a 3 yr. old and a 10 yr. at the time, and did not have time to be paralyzed in the hospital for 3 months with Guillian-Barre' Syndrome, brought on by the Epstein Barr Virus. It was a few years later that I discovered the Reactivation of EBV. For some reason they were unsure if the EBV caused the Guillian Barre' when I was in Duke University Hospital, I think they were scratching their heads! So a few years later when I was very debilitated and worried the GBS was coming back. I insisted the Dr. run the test and that's when I discovered the culprit. I have had much experience with this virus and I can say the only thing that I've had success with is a high nutrient clean diet along with supplementation of natural supplements. I have just started an anti-viral so the jury is still out on that result.
My first success was by utilizing the protocol from a book by Dr. Jesse Stoff, titled Chronic Fatigue Syndrome/AKA Epstein Barr Virus. I found it in a book store after my infectious disease specialist said he could not help me. Basically I was tired of being tired and decided I would learn as much as I could on my own about the disease. His protocol is specific to diet and supplements and I followed them religiously. The supplements were expensive but it was worth it, I was back on my feet in 3 months, after being debilitated for 9 months. I believe this book is still available on Amazon.
Unfortunately, I let me guard down and thought I was cured. You are NEVER cured from this virus, it may go dormant and your titers may go down but it will come back if you don't take care of yourself. I got complacent, stopped taking so many supplements, did not watch my diet, or get the rest I needed. Our family was under tremendous stress and my immune system could not handle it. To make a long story short, I started having symptoms of joint pain, fatigue, persistent illness, again in late 2015, and test results showed the EBV was back again. I thought surely, it's been over 30 years they must have figured something out by now that can treat this virus!! When I started researching again all I found was the anti-virals, supplements and nutrition. I did find that an Intregrative medical practice is much better equipped to help than a regular GP, or an Infectious Disease Specialist. I changed my Dr. immediately. I am being tested regularly, to know if we are making progress, and I have seen progress with lowering my titers, but then I caught a cold and they went right back up again. So now I am on an anti-viral along with the following. Vit-C, Turmeric Curcumin, Magnesium Complex, Methyl B Complex, Olivir 15, Oil of Oregano, CoQ10, Zinc, Monolaurin Supplement, L-Glutamine, Move Free Joint Health, Multi-vitamin, Calcium, Omega. All to give me energy and to build up my immune system again. I am now 66 so it is a little bit harder I think. Yes it is a pain taking all of these supplements everyday, but it is keeping me mobile and hopefully will build my immune system up enough to put this monster back in a dormant state.
Everyone's system is different, and everyone will not respond the same to a certain regimen. I was hoping there was a magic pill for this disease by now, but that is not to be. I would highly recommend getting in with an Integrative Medical Practice, so you will have an ally in this fight. They will be able to recommend and prescribe what you need and can keep watch on your liver function on a regular basis among other things. As we all know everything we put in our mouth is filtered through our Liver and EBV effects our Liver so that does need to be monitored.
For all of you out there fighting this disease, I hope my story is not a downer. The good news is, if we take proper care of ourselves, with nutrition, supplements (because we seem to need more than most folks), and proper rest….you CAN get the EBV Virus to go dormant again. BUT the bad news is you cannot let your guard down, if you have Chronic Epstein Barr Virus. It is always lurking in the background waiting to activate if your immune system is not optimal. So be good to yourself, pamper yourself and don't feel guilty about it. It's mandatory for the battle you are in for your health and survival.
Thanks for listening to my story and I hope it helps.
Thank you for your help and information I will get the book
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